By way of introduction my name is Aled Francis and I live in Griffith, NSW. I am a physiotherapist by trade and have been the Chief Physiotherapist at our local Griffith Base Hospital, as well as running my own private practice.
I have a few varied interests, the main one being a Welsh man, is rugby union. I have coached and played for over 40 years and am presently Vice President of our local rugby club in Griffith. Both my sons Dafydd Rhys and Bryn Morgan also play the sport and I had the honor of playing with them both a few years back. My wife Jane was an avid supporter of the club and travelled far and wide to see both boy's play.
Our experience of ovarian cancer is typical of the 70% of women who are diagnosed in the advanced stages and unfortunately Jane was one of the 52% who did not live beyond five years post diagnosis.
Our story begins in late July 2018, when Bryn and I returned home from a trip back to Wales. We found Jane collapsed on the floor, breathless and in extreme pain.
I attempted to examine her and could not detect any breathing sounds on the whole of her right side. I also observed a lump adjacent to her belly button which freaked me out as it looked like the Sister Mary Joseph sign – a palpable nodule bulging into the umbilicus as a result of metastasis of a malignant cancer.
The emergency department and subsequent ICU confirmed a complete collapse of her right lung, which had shifted and was compressing her left lung and heart. A pleural drain was inserted and 5 ½ litres of fluid was drained from her right chest cavity. Further investigation also showed the presence of malignancies in the right chest cavity; diaphragm; peritoneum and ovaries, with CA125 levels way into the 400+ mark.
The following day severely traumatized us both as Jane and I were given the diagnosis of Stage 4 ovarian cancer and the prognosis of six months to live – there was nothing that could be done, and Jane was to go home to die.
What followed was six days of hell in trying to get Jane a seat on the air ambulance to Sydney. I also went through a personal hell as I had to tell both my sons and in-laws the fact that she had Stage 4 ovarian cancer and in her present situation, had only months to live. This devastated my family, but I had to stay strong not just for them, but also to support Jane.
The adage that the treatment is worse than the disease unfortunately holds true in this case."
ICU drains you physically and emotionally. I was only able to get Jane transferred to Sydney when I contacted an orthopedic surgeon friend-of-mine who agreed to accept her at his hospital via their dedicated air ambulance service. This action moved mountains and within an hour, we managed to get Jane a seat on an air ambulance and two days later to the specialist centre at the Prince of Wales Women's Hospital, Randwick.
The weeks that followed were tortuous watching a brave woman struggle through the pain that accompanied a total hysterectomy, lumpectomy and peritoneal sheath excision. I also went through the personal struggle to support her uncompromising will to live despite massive adversity. Unfortunately, the cancer that was present on the diaphragm was too dangerous to remove – we knew at best, her time would be limited.
The Francis family: Dafydd, Jane, Bryn and Aled.
At one stage, she couldn’t tolerate the post-surgical medication but was uncomplaining, only telling staff she was sore despite being in agony. What the clinical staff were able to do was to give us hope when there was none, something we clung onto desperately. The staff at the centre were magnificent and soon we were able to get Jane home and into chemotherapy.
Chemotherapy and its side effects poses its own challenges, but Jane was strong and positive throughout, just wanting to be able to stay on chemo to lower her CA125 levels.
At this time, she qualified on compassionate grounds to go onto a clinical trial for a parp inhibitor called Olaparib, which at that time hadn’t yet been conducted on ovarian cancer sufferers. The trial was for 18 months, but we clung onto what little we were given. Between the chemotherapy and the Olaparib, Jane’s CA125 levels dropped, and she was able to return to the school where she worked as a teacher's aide. We were able to return to a guarded sense of normalcy.
Jane made it easier for all of us in that she was positive, strong and uncompromising in her will to stay alive."
2021 was exhausting, nothing could have prepared us for what was to come. Jane’s CA125 markers slowly increased at first, and then like a train began to elevate. It's hard to look into the eyes of someone who was fighting so hard to stay alive and stay positive, but my job was to support her and my family and to reinforce what little hope we were offered.
Jane made it easier for all of us in that she was positive, strong and uncompromising in her will to stay alive. In the coming months she somehow endured nine different investigations or surgical procedures; chemotherapy; radiotherapy, blood transfusions, iron infusions – the list went on. All she wanted was to be fit enough to go back on the chemotherapy to give her a little more time. Ultimately, she was denied this as she acquired a radiation burn within the walls of her oesophagus, which meant that chemotherapy increasingly was not an option. The adage that the treatment is worse than the disease unfortunately holds true in this case.
By now, Jane started to face her own mortality recognizing that her time on this earth would be short. She would stare into space for hours on end, holding her head in between her hands due to extreme pain. Being a tough uncompromising country woman, she never talked or showed signs of anxiety, but we could see from her expression that she was facing her end.
The Francis family on holiday, Jervis Bay.
Endoscopy after endoscopy, followed by an oesophageal stent, gave us some hope that she may recover from the radiation burn and it would heal. A day before our 25th wedding anniversary, I took her into the emergency department where she collapsed in extreme pain from the radiation burn. By now, she was on life support in ICU.
My older son who was a paramedic in New Zealand was trying to get back to Australia to say a final goodbye to her. In the middle of a covid pandemic, he was detained by immigration for what seemed like a lifetime in Melbourne airport. I had to fight the specialist every day to keep her in ICU as they wanted to discharge her to the ward. I knew the ward had no life support facilities so she would have passed away before my son would have had a chance to see her.
I never had the chance to see my father before he passed away and knew how important it would be for him, not just now, but also in later life. Eventually, after 6-8 hours in a holding cell he was granted entry and was able to say goodbye to his mother before they withdrew her life support.
Jane lasted for two days off life support before passing away. We never left her side for over 48 hours, as we didn’t want her to pass alone. She, however, had other ideas as when we left the room for the nurses to bathe her, she passed away.
Before she passed and as we were planning her funeral, she asked me to tell people her story. I did this at her funeral and I’m doing it now. It's not any easier as we have been left traumatized by the whole experience.
I haven’t worked since and have sold both my house and practice – I couldn’t bear to live in the same house on my own with all those memories of her struggling to live.
Nighttime those memories are vivid and will never leave me. Life will never be the same again, but hopefully time and telling people her story will somehow help.
Aled.
In July, 2022, Aled hosted a Ladies Day fundraising event at his Griffith Blacks Rugby Club, NSW in honour of his wife Jane. Over $9,000 was raised for the OCRF.
We are deeply grateful to our community fundraisers, who through such hardship and loss, continue to raise funds for potentially life-saving research.